A year in review: End-of-life choice during COVID-19
Webinars | December 9, 2020
In this recorded webinar, Dying With Dignity Canada (DWDC) heard from three clinicians about the experience of providing health and end-of-life care during COVID-19. Watch to learn about what has changed in the nine months since the start of the pandemic, and what it has been like to provide medical assistance in dying (MAID) during this period of change and uncertainty.
Tip: We’ve uploaded timestamps so you can jump straight to the questions and answers that interest you most. Just select “Watch on YouTube” above, and read the description underneath the video.
On December 9, 2020, Dying With Dignity Canada (DWDC) heard from three clinicians about the experience of providing health and end-of-life care during COVID-19. Discussion included an overview of what has changed since the start of the pandemic, and what it has been like to provide medical assistance in dying (MAID) during this period of change and uncertainty. This blog post summarizes some of the key takeaways from that presentation.
Please note that the experiences presented in this summary are those of the individual clinicians, and the processes may differ from province to province.
Dr. Lilian Thorpe, M.D., Ph.D., FRCP, MAID assessor and researcher
Dr. Jonathan Reggler, MB BChir, MAID provider
Julie Campbell, MBA, MN, NP, MAID provider
Key Takeaway #1: COVID-19 has not prevented MAID provisions from taking place, but there have been challenges to overcome.
Because of restrictions in hospitals and long-term care homes across the country, MAID assessors and providers have had to be creative in how they fulfill the legal requirements for MAID. Whether it be transferring a patient to an alternative location for their MAID procedure, or identifying ways to reach patients virtually, when they are in a rural area and/or do not have access to the required technology, assessors and providers have certainly had to pivot throughout the pandemic to ensure equal and timely access to MAID.
Key Takeaway #2: Someone with a high mortality risk from COVID-19 may not have enough time to go through the MAID process, and may consider alternative end-of-life options.
Under current legislation in Canada, a person must have capacity at the time of their MAID provision, which often means reducing or eliminating medications that decrease suffering. A patient may consider palliative care or palliative sedation as alternatives.
“My job as a MAID provider is not to provide as much MAID as possible,” explained Dr. Jonathan Reggler, “but to ensure during my assessments that my patients have all the information they require to choose the best death for themselves; and that is often not MAID.”
Key Takeaway #3: Even with restrictions and limitations on gatherings, it is possible to make your end-of-life experience special and personalized to you.
We have all had to adapt to a new normal because of the COVID-19 pandemic. Virtual gatherings and socially-distanced get-togethers have become a way of life, even for the dying. Some examples of the adaptations people have made include living wakes in the park during warmer months, and virtual MAID provisions using platforms like Zoom. But MAID providers and assessors have also found ways to adapt and ensure the process is as human as possible. Dr. Lilian Thorpe described situations where she would stand at a safe distance from the patient being assessed for MAID, take off her mask to create that personal connection, then put the mask back onbefore getting closer to the patient.
Key Takeaway #4: The introduction of virtual witnessing has streamlined the MAID process and made it more efficient, for both patients and assessors.*
In many cases since the start of the COVID-19 pandemic, the MAID provider has been the only one seeing the patient in person. The second assessment can often be done virtually in some provinces. The provider can bring the paperwork with them to the patient’s residence, and use their technology to support the patient while the second assessment is completed, and the independent witnesses sign virtually. As a result, both assessments and all of the witnessing paperwork can be completed in one visit.
Thanks to these new virtual practices, family members can be present at the initial MAID assessment, no matter where they are located. This opens the line of communication between physicians and nurse practitioners, patients, and their family members so that everyone knows what to expect and how to proceed after an assessment.
*Note from DWDC: Virtual witnessing may or may not be available where you live. We encourage you to speak with your MAID provider to learn more about local requirements.
Key Takeaway #5: COVID-19 has reinforced the importance of Advance Care Planning.
All Canadians, at any age and stage of life, should have open and honest conversations about what they want for end-of-life care. Questions like, “What are my chances of a meaningful recovery” should be asked and answered honestly, particularly when diagnosed with a virus like COVID-19. It is critically important that patients clearly articulate their wishes to their loved ones who may be making decisions for them at a later date.
These are just a few of the insights gathered from our December webinar, “A year in review: End-of-life choice during COVID-19.”
As the COVID-19 pandemic continues to evolve, some of the information presented in this webinar may no longer be up-to-date. Please consult with your local health authorities for the most timely information.
It’s my pleasure to introduce our panelists today. Joining us, we have Julie Campbell. She is the Lead, MAID Access for the South West LHIN, Care Connector Nurse Practitioner for the Provincial MAID Care Connection Service and a MAID assessor and provider. Julie holds an undergraduate degree in Health Sciences, Business and Nursing and a Masters Degrees in Business and Nursing.
Prior to her work with MAID, she worked as a nurse practitioner in addictions and mental health and continues to work in Travel Medicine. She was recognized in 2017 with the Pfizer Award for Clinical Excellence and in 2019, with the Canadian College of Health Leaders Distinguished Service Award. Julie is also an avid community volunteer and has given her time to numerous health and service organizations both locally and nationally.
Next, we have Dr. Thorpe joining us. She is a geriatric psychiatrist with a dual academic appointments as Professor of psychiatry and Community Health and Epidemiology at the University of Saskatchewan. She obtained her M.D. at the University of Toronto, completed her residency in psychiatry and Ph.D. in Community Health and Epidemiology at the University of Saskatchewan.
Dr. Thorpe spends much of her clinical time performing assessments of capacity in complex patients, but also assesses many patients requesting MAID. She was a member of the Saskatoon Health Region committee which developed the MAID policy and has now been involved with over 400 assessments and/or clinical MAID provisions throughout the province. Dr. Thorpe has provided MAID-related teaching sessions at multiple universities and Health Authority and conference settings. She is actively involved in MAID related research and publication. Our final panelist today is Dr. Jonathan Reggler, a family physician in Courtenay, BC on Vancouver Island. He studied medicine at the University of Cambridge in the United Kingdom, graduating in 1984 and then spent eight years in the British Army prior to entering general practice in southern England. He emigrated to Canada in 2003. He combines hospital with office practice. His office practice is deliberately skewed towards the care of seniors and he thus also provides a lot of palliative care. Dr. Reggler served on the Ethics Committee of St. Joseph’s General Hospital in Comox, BC for many years, resigning from the committee in 2016 because of that hospital’s prohibition on medically assisted deaths.
So that’s our panelists for today. Before I turn it over to our panelists and get started with our discussion, I wanted to give a brief update on Bill C-7. We received so many questions about the anticipated amendments under Bill C-7. So it’s currently in its third reading in the House of Commons. From there, it will go to the Senate where it will have to go through the same process of first, second and third reading.
We anticipate that the bill will be sent back to the house with amendments. And from there, we can expect a debate between the House and the Senate over the amendments. We continue to strongly encourage and look to parliamentarians to pass Bill C-7 before the deadline of December 18th, set out by the superior court. As we learn more though about what’s going on with C-7, we will be sure to update our supporters on social media and via email.
So hopefully that covers a little update on what’s going on there and we’ll get started with our COVID-19 and MAID’s session. So I will pass it over to Kelsey Goforth, Dying With Dignity Canada, Senior Program Manager, who will be moderating today’s session. Kelsey.
Thank you, Nicole. And thank you so much for all of you joining us this afternoon for our final session of what has been a very stressful and interesting year. We hope that these webinars have brought some education and sense of community throughout this very interesting time that we’ve been going through.
So before we get started, I’d like to preface this webinar by saying that the healthcare providers we have on the call today, will be speaking generally about their experiences and observations. But if you do have any specific questions or concerns related to your own healthcare, we of course encourage you to speak to your own healthcare provider about those specific questions that you may have.
So first to get us started, I’m wondering if our support for our presenters could tell us a little bit about the COVID numbers in their areas, as well as the COVID transmission, what that’s been locally looking like. Lilian, do you want to get started with a little bit of information about what you’re seeing is the statue? Hope you’re unmuted, Lilian.
Unmuted, there we go. So we certainly have increasingly of rates of MAID provision starting around the time of the COVID start. So we just got data from our provincial program that compared each month to the previous month in the last year, because there’s always a fluctuation in the course of the year with MAID. And so, we compared the two and that’s very clearly up. And so, we’re seeing that in all areas of Saskatchewan right now. We’re seeing increased requests and increased provisions as well that seem to have escalated since off.
So in my regular geriatric psychiatrist practice, I’m also seeing a big escalation of people saying they want to die, because visitation privileges that they’re not seeing people that they feel about at their age that by the time COVID is over, they might’ve died anyway. So it’s been a very big challenge for us, but we’re certainly seeing a lot of big numbers and … I guess that’s mainly what I have to say about that.
So that’s an increase in MAID requests. And what’s the COVID situation like your COVID numbers are going up?
Yeah. So the COVID, we now have the third highest per capita rates in Canada. So the overall numbers are not that high in Saskatchewan as they are of course, because we’re a smaller province but per capita it’s high now, it looks like the rate of increase might be plateauing now. So we had Ontario and Quebec and BC had a higher beginning to the COVID spike. And in the summer we went bad, but over the past month or so, we’ve had big spikes in COVID.
So we have huge outbreaks now in some of our nursing homes, we’ve had a major increase in deaths with COVID over the last three weeks. So Saskatchewan is not looking very well because it’s now got into a lot of the sort of underprivileged areas like the North where indigenous populations so very close together. And that is a high area of deaths right now in Saskatchewan as are of course the nursing homes which we always knew would be.
But [inaudible] of fairly recently, there was no nursing home transmission and we now have outbreaks in a lot of them. So we’re now sort of talking about… We haven’t got a complete shutdown like Alberta House, but they’re talking about maybe that might become necessary, where we’ve got to slow down all elective surgeries and we’ve got restrictions on visiting at home, we have restrictions on Christmas visits and so on.
Okay. Jonathan, what are things in your area on Vancouver Island?
But in the point of view of COVID, for reasons which I’m not entirely okay, very protected here, even though we haven’t stopped the rest of Canada coming here, we’re encouraging against, but we have very few cases, but currently on the Island, which has a population of 800,000, we’re having sort of somewhere between 10 and 15 cases per day, which is really tiny compared to the rest. But there’s definitely an uptick.
And so, there hasn’t really been an effect, only requests for MAID as far as we can tell directly in terms of the numbers of people who are having a medically assisted death. We can get into what effect it’s had and why on request to be assessed. It certainly hasn’t had a measurable effect on the numbers of MAID, but Vancouver Island has a very high level of medical assistance in dying.
Anyway, we have 7% of all deaths are by MAID on Vancouver Island, which is compared to 2% across Canada, 4% not quite in BC. And you should compare that with the Netherlands where they’ve had MAID for 20 years where the level is about 4.5%. So it would be surprising, I think if COVID led to a great increase in a population who are already actually accessing it in high numbers.
Okay. And Julie.
Well, I’m in Ontario where we saw almost 1900 cases today and certainly have areas of the province with a lot of pressure on our hospitals increased cases, increased deaths. And it seems to be changes every day moving into… Where I live has just moved to orange with the fret of moving to red soon. Hospitals are canceling elective procedures. And I think what’s important for the public to know is elective isn’t cosmetic surgery. This is planned surgery as opposed to emergent surgery. And sometimes that distinction is not always there, but these are very much needed surgeries that are being postponed sometimes.
And so, that’s what we’re seeing. I don’t see here the change, I see a steady increase in requests for MAID, but if I look at this October compared to the October before, the jump from 2018 to 2019 was actually bigger than the jump from 2019 to 2020. Although it’s a very steady solid increase and the numbers are much bigger.
Thank you. So most questions that are coming through live, we will address at the end of the webinar. The ones we’re trying to get through during the main part of the session are the ones that were sent in ahead of time. But one did come in just to follow up question to what Lilian was saying. And that question is about the trends. So could you speak to any differences between a rural versus urban versus what’s happening in the Northern part of the province in Saskatchewan?
Yeah. So right now the death rate is actually much higher in Northern foreigner, Northern rural areas. So the areas where we have indigenous populations they’re having big outbreaks and they have high deaths. There is a high comorbidity in the indigenous population. So if you have diabetes, vascular disease, all sorts of things wrong with you, you’re more likely to die of COVID.
There are also the people live in sort of a very cramped quarters. So if anybody has COVID, they are transmitting more. So we’re seeing the transmission high in those areas and then also the death’s high. For exactly the same reason that we’re seeing those trends in the long-term care facilities that once it gets into there, there are people very close together and some of the older nursing homes. So actually our biggest rates are in the older nursing homes where people are still in these multi bed areas rooms.
And so, it’s very hard to isolate people and the people that are there often have cognitive impairments. So they’re not really that capable of following through on any kind of hygiene things. So it presumably came in initially with staff, but then the residents themselves have a high lot of personal care you have to do with them. So you have to get really up and close and no kind of PPE is 100% effective. And so, for those both reasons, that’s what we’re seeing with this trend right now, and also of course getting colder.
And so, we have now more people indoors. So it is very unfortunate. We have a lot of the sort of inner city things that would be the other area right now that have closed down like a food bank has had outbreaks. A lot of those other resources for inner city people, people are homeless. Also, now some of them actually have had to close down for a bit, which is really unfortunate because those people are so vulnerable.
Thanks Lilian. So the questions we’re going to get into now are categorized in a bit of an order here. So we’ll talk a bit about MAID availability, a bit about the MAID experience and then some questions that came through about end of life options for people who do end up having a COVID diagnosis.
So as MAID assessors and providers and being involved highly in the MAID programs in your areas, have you experienced any instances where a MAID provision has not been able to move forward? And of course, keeping confidentiality in mind and not being able to share too much, but could you share a little bit about what has been happening and if this is still a risk for people across the country who may be looking to have MAID some time in the near future? And Jonathan, do you want to get us started?
Yes. So here in Vancouver Island, we have not in our area had any problems where we’ve not been able to go ahead with the schedule of MAID. Again, I’m in a very unique position. I probably practice in the community with the highest availability of MAID providers to the population. We have five providers for a population of 60,000, which is extraordinarily high. And if it was the case that one of the providers suddenly had to quarantine, we would be easily able to switch over to another provider.
I think there probably will be access issues. However, and Julie and Lilian may be able to speak more knowledgeably to this. But it occurs to me that one of the problems is that quite a number of MAID assessors and providers actually come into the work towards the tail end of their career. It’s something that they do after they have finished or are finishing being a family physician or they’ve retired from a specialty and they move in to MAID work. And of course, people in that situation, the older people are themselves more vulnerable. And I think certainly as we get into the winter and the spring, I actually do think that we might find that there are providers and assessors who come to the conclusion that they can’t actually continue. Or even if they’re not vulnerable, their spouse, again, because of age, is older and they will stop. So I think that could be an issue going forward.
That’s wonderful. Julie, do you want to share a bit about Ontario?
Yeah. I think the pandemic has created challenges for sure. Where I’ve seen are instances where all of the providers in a particular hospital are very engaged in COVID work or isolated to a particular floor during an outbreak. And so, we have had to move patients out of hospital and find alternate places for them. So if I think way back to the beginning of the pandemic, we had a patient who we moved to a local funeral home. The patient didn’t have a home that was available for MAID. And so, we had no providers in the hospital that had a hospital privileges. They were all engaged in COVID work. And so, we moved the patient out, so that they could access provision.
So I would say, we’ve been more creative about how to ensure access is available, but in time it opened other doors because we now have a wonderful relationship with the funeral home and have done many provisions there since, for patients that want that as an option. So in some ways that’s been good. I haven’t found patients with an inability to access, but there have been some challenges. So in particular, witnessing the forms. There are times when that has been very challenging, or patients with no virtual access. So the remote communities without cell service or people with no internet access, no smartphones or no technical capabilities, and no support system to help with that.
So sometimes we’ve used home and community care in the past and say, “When you’re in the home, we’re going to do our visit using your technology to support the patient.” But even the visits from providers have gone down considerably and everybody’s trying to move to virtual means. So for patients that don’t have that technology, I can see it being more challenging, but we’ve managed to work around it.
Thanks Julie. Lilian.
Yeah. Lilian here, so we haven’t had any cases that I’m aware of that didn’t happen because of MAID by COVID. But what we’ve had to do is have much more community cases because it’s harder to get people into hospital. And the limits on people visiting are much more stringent. So what we’ve done is way more community. And some of the cases, we have one case that we have in hospital, we’ve had to transfer to another hospital. We actually just drove. We all met at the person’s farmyard. I mean, he was so sick. He couldn’t stay there more than a few hours, but we all drove there to the farmyard. He had it in his farm. And so, we’re doing a lot of those personal things. It is definitely a problem with virtual access on rurally, and a lot of our older people don’t have good access even in the city, so good wifi and so on.
So we do some just by voice. I prefer not to by phone because you don’t see what’s in the room around that person. If there’s somebody trying to influence that person, I prefer not to, but sometimes it’s very clear cut. So we’ve done a whole range of adaptations to all of this. I try still, most of us try still to see people in person. So within Saskatoon and that whole environment, we try to actually go out in person because that’s probably still safer for that person then coming in for any assessments.
We had changes, but not yet reduced. We’ve been told we might end up having trouble with medications, but it hasn’t happened. We’ve been told we might not be able to transfer by ambulances, if they’re all out of business for being cleaned because if a person has been transported, they have to completely sanitize the whole thing. So when we’re transferring from an objecting site.
We’ve been told that they can’t necessarily guarantee that they could do that for us. So when people are very sick. So yeah. So it’s not so far, but I can anticipate that might be the case. But as people know more about the limitations, most people are very aware of COVID now. They all know that they prefer to stay home, if they think they’re going to die quickly or go to a hospital, where they don’t have to have transport.
So a lot of pivoting and problem-solving, it seems to be going on all across the country. Thank you. Has anyone on the call or anyone on your colleagues that you work with who are MAID providers, have they had any MAID requests directly related to COVID? So anybody who has a COVID diagnosis and wants to have MAID because of that. Julie.
Well, I’ve had patients call that don’t have COVID requesting a prescription for MAID in case they get COVID. And so, we’ve had conversations about that. Certainly, they’re not eligible at that point. And I have had COVID positive patients receive MAID, but they were patients that were scheduled to receive MAID anyways and contracted COVID in the meantime, more than patients who have COVID requesting MAID.
Again, such a low level of COVID in the community. No, we haven’t had anything like that. I think we’re all getting ready for the possibility of somebody saying, “I’ve got COVID. I want to have a medically assisted death.” But I think one would take that on a case by case basis. Certainly, 1% of the research really explained you can’t give somebody the oral medication on the off chance that they might get COVID because they have to have a serious and incurable illness at the time that they are found eligible.
But I think if somebody was seriously ill with COVID, but still had capacity, then one would be obligated if the request was made by a patient to have MAID. One would be obligated in that situation to do a full assessment. Again, because whilst it is possible to rescue people from COVID.
PART 1 OF 4 ENDS [00:23:04]
It is possible to rescue people from COVID. And in fact most people with COVID even older people, very old people with COVID are rescued from the illness. People are not obliged to be cured or for attempts to be made to rescue them. And so it would be necessary for us as providers. I would be interested to know if Judy or Lillian feel differently, but it seems to me that we would be obligated to take the request at face value and to do an assessment. I think the point would likely be that one would want there to be some reason to believe that the person might survive impaired. Or that they already had a poor quality of life or significant disabilities that would lead one to then provide MAID on the basis of COVID the other illnesses not amounting to a serious incurable collection of comorbidities.
And what you’re saying Jonathan, we might be able to reflect a bit on what I think it was James Downer wrote as well as some colleagues earlier in the pandemic about what end of life options might look like for somebody with a COVID diagnosis. And I think what was said in that document if I recall correctly is that usually for the individuals whose COVID diagnosis might end up being fatal it usually progresses quite quickly. And that person is sedated quite quickly. So often the main process is there’s so many steps involved that it often seems like the sedation and keeping the person comfortable might be the better option, although it may not have been the preferred option. Is that-
And then of course if the other two allow me to continue that of course is true of many illnesses. Among things for example of what we call acute exacerbations of COPD. So somebody with chronic obstructive pulmonary disease who gets an infection, the problem currently at least with the law is that we have to maintain that person with capacity. And that usually means backing off on medications that will relieve suffering. And I do see my job as a MAID provider, not to provide as much MAID as possible, but to ensure during my assessments that my patients have all the information they require to choose the best death for themselves. And that is often not made. That is often palliative care with at the end if necessary because of unrelieved suffering, palliative sedation. Because apart from anything else one can provide palliative sedation and have the person not suffering within a period of minutes or hours rather than the day or two that it might take to get a MAID sorted out.
Lillian or Judy?
That’s a really good comment Jonathan, because actually we think of MAID there’s the quicker alternative, but if you look at all the paperwork that has to happen for me it could be actually quite a bit longer. So it’s really very case specific, it’s person centered and specific to that situation. So I could see there might be situations where somebody COVID positive might end up having MAID but it would be unlikely. It is most likely as we heard somebody who has already applied, all the paperwork’s done, then they’re diagnosed. It might be something like that. But we have to remember how you’ve stationed up. Palliative sedation isn’t always possible to do in the home. So people if they’re really, really sedated often need to have 24/7 nursing care. So when we’ve looked at that sometimes this does mean a person being in hospital and they sometimes choose not to. So sometimes difficult choices about what’s best for that person.
Thanks Lillian. So we’ll move on to a little bit about the MAID experience and how that has been looking a little bit different this year compared to previous years. So we know just through the work that we’re doing and the individuals that we speak to who are planning to have a MAID death that for some of them having some sort of ritual or way to mark the occasion in a very personal way is important to them. So things like living wakes or arranging for special final visits or parties, that kind of thing with limitations and restrictions on visitors and just people gathering. How has MAID looked different this year and what are people doing instead to make the experience as personalized and special to them as they can?
Well, you know that living wakes still happens. Even in COVID times we had a woman with ALS who just had MAID and she knew she was going to be planning this. So she had a big party in a park and that was in the summer knowing that she was going to be a few months yet. And she had all her family there, all extended family, great grandchildren, everything, all distance in an outdoor environment. They all celebrated as if it was her… She called it her life but she called it her life funeral she called it. And she said it was better than one when she’s dead because that way she got to hear everybody what everybody said, and she got to see everybody. So people are still doing some things, but if it happens quickly it’s pretty hard, it’s much harder to do that of course.
Sometimes it’s virtual. So we’ve sometimes pull people in virtually to get quite a few people in the room, but it is obviously not having the big numbers. We’ve had some huge numbers for some of our earlier cases and previous years, but we’re not doing that anymore. But you can bring them in virtually with all sorts of things. Like we use Pexip which is a software, you could Zoom, you could do all kinds of things to bring family members in. And then the advantage of that is you don’t have to wear masking. And so they can see the faces because we all feel really terrible having to go in at the end and have none of our faces showing. So what we often do is briefly take a distance, take our masks off, say this is what we look like. When we get close we have to put them on again, put them on again. And it is very hard having that impartial death at the end too.
Sure yeah. During such an intimate moment in someone’s life and having to be fully covered in such a way. Judy anything to add.
I think the masking has been challenging. From a personal perspective as a provider it’s hard to have that barrier at that moment of compassion for families and patients. But I think throughout the pandemic it’s gotten a little bit easier in that this is just the norm. It’s become so much a part of everything that we do that it’s become a little bit easier, but it’s still definitely not my preference. We’ve had as Lillian pointed out many people attend virtually. I attended one recently where we had a physician from the United States that was a family member. And so that was an interesting perspective for them to come from an area where MAID isn’t allowed and to be present at a provision as present as you are virtually.
And we’ve had a lot of people applying for exemptions to cross the border to be present, four provisions. But we’ve asked to take a look at the space. So sometimes I consider the patients the space directly around the patient to be prime real estate. So we’ve added extension kits on to give us a little bit of space and allowed the family to be closest to the patient. And we did that pre-COVID, but even more now. And/or we positioned people on one side of the bed and us on another, just to add in some extra space when we can. Both to protect the family members from us and us from carrying it to the next patient that we see. So that’s been helpful.
And just to clarify-
I think there has been an effect. And I think also, I mean Lillian spoke eloquently about this outdoor event with her patient with ALS and I had a similar event by a river in a forest Glade. It was wonderful. But now that we’re getting into winter, I think that’s just going to be that much more difficult to achieve. And especially for hospital provisions, there are significant limits that the hospitals are rightly though sadly imposing on the number of people who may attend. Of course I think we have to recognize that this is actually a problem for all deaths, not just MAID to deaths. I mean I had a death in my family a month ago and was unable to go back to the UK to be there. And I had to attend by Zoom. here was almost nobody in the church and this is somebody who was well known in the community and there would have been a hundred plus people.
It’s a problem for all of us whatever the cause of death be it MAID or otherwise. I think that families can trust the MAID providers and assessors will continue to do all we can to make the effect as little as possible just by being aware of it. As Judy says, I mean wearing a mask at that moment is horrible frankly. When it’s so used as a MAID provider to actually getting very close both emotionally and physically to the person to put that sort of barrier up and in areas where COVID is a very serious problem unlike on Vancouver Island where people having to wear in some cases full PPE with gowns and so forth. It becomes what we have all strived to make MAID not be, which is a cold clinical Spartan event. And I’m really, really looking forward to when we won’t have to be like this anymore.
One of the points that you made Jonathan is about this applying to all deaths. I think has been a real advantage I’ve seen in our MAID deaths is that they are so planned that we are able to move patients out. And I think about the funeral home deaths that we’ve had, where the funeral homes were allowed 10 people and the hospitals were allowing only two. And so patients would have to choose between their three children if they wanted to stay at the hospital. And so because it’s so planned, we were able to take the patient out of the hospital and bring their closest family members with them. And so in some ways it’s been a real blessing to be able to do that.
Thank you all of you. So we’ve been in this pandemic for a number of months now. And the next question is just to understand how MAID has changed. So if we look at MAID provisions in March and April when this was just starting to MAID provisions now as the year’s coming to a close. Has there been anything that you or your colleagues have learned and implemented to try to make the MAID process smoother and better for those going through it? Judy you want to get us started?
I think one of the best takeaways from this has been the virtual witnessing, which has really helped patients. Its actually made the process a lot faster. So I work in an area where there are some really fantastic providers. What we’ve done in most of the cases as the provider is the only person that visits the patient. And so one of the other assessments is done virtually, which protects the patients as well. The provider brings the paperwork with them and then uses their technology to support the patient while the witnesses sign virtually. And so they’re having both assessments and all of their paperwork done in a very short period of time. And that’s been one of the best things that we’ve managed to come out of this I think.
And then as providers we meet virtually and we talk about these things that are things like removing our mask from a distance as was pointed out to introduce ourselves. And how do we feel about those things and how do we maintain those personal connections with patients and families at a time when we have physical barriers between us and having those community partnerships has been really helpful as well. And we’ve certainly used a lot of our home care nursing skills. They’ve been an invaluable team of getting those referrals to us, letting us know that patients are interested connecting them into the system at a time when they have perhaps less visits to make those requests.
Yeah. I really think some of the COVID changes will help us in all other areas of medicine too like doing the virtual stuff that absolutely that virtual witnessing has been really helpful. And I think we’ll start doing it in other areas as well now, because we’re all getting our technology going. So we’ve got our Zoom, we’ve got a WebEx, we use Pexip a lot in the health [inaudible] here. We’re getting good at it and our patients are getting more used to it. It is nice for our patients not to have to come in. They spend much less time traveling. I can get in the whole family for the initial discussion about MAID has been wonderful because I could do a set it up. So I have somebody from BC, somebody from Alberta and some Ontario and then a patient in Northern Saskatchewan.
They’re all on the line and you have to discuss that ones because they all hear what’s going on. And it’s been an enormous job in our ability to do that because otherwise often you have multiple phone calls and dealing with people, making sure all know what’s going on. Because we know that when people don’t know family members what’s going on, they’re not prepared to have more sort of stress afterwards. We did one of our summer projects looking at PTSD in family members after MAID. That was our first summer project with med students. And the only two people that described a bit of PTSD were family members who really did not have this discussion with us. And they came and called at the end and they really weren’t prepared. So now they’re online. They’re all there.
They all communicate, everybody knows what was said. And it just streamlines things. Because often the information is received differently by different people. And if you have it said in front of all at the same time it’s better. Right now the reason I was late there was a whole conflict area between one person, family member saying one thing, the patient saying another, nurse and other. And it would have been helpful if to start with we had everybody online and have them all there. So yeah, we’re learning a lot and we can make a lot of other things work better now.
It’s a very interesting conflict actually. Because Lillian you earlier and I agree with you, I think it’s wonderful to be able to have everyone together virtually so that everyone hears what everyone else is hearing. I think that’s very important. But I also share with you the hope that we don’t abandon the face-to-face assessment. And I’m not doing that although in BC we are permitted for both assessments to be still there. It has to be the provider who’s done one of the assessments. But one of the things that makes me extremely uncomfortable is the idea of turning up and the first time I’ve actually met somebody face-to-face is the day that I’m going to… Not only the day, but the hour that I’m going to provide them with a medically assisted death. Maybe COVID will reach the point where we have to absolutely restrict unless completely necessary face-to-face visits. Because that’s such an important part of being a MAID provider is meeting the person in reality.
Well, I so much want to agree with you. I know yeah during the information sessions that’s really nice too. One of the sessions being able to pull them all in. But seeing people in person that’s why I really much prefer that for at least one of the assessments for sure. So one of us has seen the person. So far I’ve got a bunch of these examples. So I had one applied for MAID, we thought we’d follow rules through a virtual assessment and I just didn’t feel right about it. I did a virtual assessment and I thought something was off. So I said, “Look, I’m not quite comfortable about this. I just want to drop by on my way home because you don’t live too far away.” Dropped by on my way home and I got there and this person had coarse tremor of end stage renal failure.
And that did not show up. It was in the arms and I said to the daughter I said, “Oh, how long has he had these tremors?” She said, “Well, the last three days and it’s getting worse.” I did not see that in the virtual at all. That made a huge difference because we actually had to expedite him because he was obviously in the later stages before going into [inaudible]. And the family hadn’t picked that up. I didn’t see it, so that was one. My other case was a person who had lost a lot of weight and was being investigated for all kinds of things. I walk into the room, nobody had seen this person except for me at that point and much investigation ordered this person had [inaudible] up and down the tongue [inaudible], unable to swallow, obviously ALS nobody saw this person. And they thought he had all kinds of other things.
So I actually agree that ideally at least one assessment should be in person if you possibly can. And I always do a personal assessment if I possibly can. And then the second one less important that at least one of us has seen that person.
Just to follow up on that and clarify, you cut out a little bit Jonathan, but I think you said that in BC both assessments can be done virtually, is that right?
That’s correct yes.
And is that the same in Saskatchewan Lillian?
And Ontario as well? Okay, great. So that’s something to keep in mind. We have clinicians from three provinces here, but there might be differences in your own province. So if it is something that you’re going through the MAID process now that would be something to ask your MAID provider in your area because there are some differences. So we will switch gears a little bit and talk a little less about MAID and more generally about end of life options for people with COVID 19.
And this question has been coming up a lot. We got many people reaching out early in the pandemic with this question and it’s still quite prevalent in our communications. So if a person did get a COVID-19 diagnosis, what are their options? And more specifically, if a person does have a COVID diagnosis and we’re assuming in this case that it’s somebody who has a quite severe case, not just mild symptoms that are improving over time, does this person need to go to the hospital? Can they refuse to go to the hospital? What would that look like for them? Jonathan, do you want to get us started?
I mean in part it sort of comes back to our discussions about what’s the most appropriate way of dealing with somebody who’s very sick with COVID. And the disadvantage of MAID being a process which is not really seen by physicians. And I think it’s important to distinguish it. I think physicians see MAID far less as something that can be done in an emergency than does the general public who imagine that it could be. There’s a lot of process rightly to go through before a physician deliberately ends the life of somebody. And the problem is that the patient has to be well enough to go through that assessment process and it’s tiring and it takes time. So if somebody is seriously ill with COVID, then I think it goes to our earlier comments about palliative care, palliative sedation.
I think the patient with COVID who is sick but is determined not to go to the hospital and it’s interesting and sometimes they don’t want to go to the hospital because that’s where everyone’s got COVID. Well, they’ve got COVID so they really should go if they wish an attempt to be made for them and to help them survive. Again, it comes back to how sick is that person. I mean there are people and Lillian rightly pointed out it’s quite difficult sometimes to provide palliative care and especially palliative sedation to a person at home. There are ways around that.
The difficulty for with providing palliative sedation at home is maintaining sedation. Now, ordinarily in a hospital doctors will write orders in such a way that the nurses who are skilled at this determine the need for the next sedating injection. So it’s done on an as necessary basis. Not always but usually because the idea is to keep the person sedated, they’re not trying to end their life with the drugs. You are simply keeping them sedated whilst they die. But it’s very difficult to actually help a family member because in BC family members are allowed to give these drugs. They’re taught by the home care nurses how to give.
PART 2 OF 4 ENDS [00:46:04]
… are allowed to give these drugs. They’re taught by the home chemist is how to give subcutaneous injections. There’s usually a little needle already in their arm, just under the skin, and the injection is just a matter of marrying up the syringe with [inaudible] injecting. It’s very difficult for non-professionals to decide the degree of sedation. And also giving them the choice means that if their relative dies soon after the last injection was given, it can lead to distress in the family member who believes that they ended the life by giving the injection, particularly if it’s [inaudible] minutes. In that case, you can just state, as the doctor gives the order that the relative should give the injection on the clock, you state when it should be given and it’s given.
But there are a lot of difficult decisions around choosing to stay at home. Being a family member, in some cases, for example, you don’t have 24 hour nursing care and we don’t in BC. We don’t have overnight nursing care available from home care. In some more urban areas it’s possible. I don’t know that they do. Probably. There are lots and lots of decisions around that.
Essentially, decisions around how to deal with a serious COVID infection are the same as decisions to be made around acute exacerbation of COPD, pneumonia, other infections, where the person has reached the point of life where they don’t want to be. They don’t want to survive any longer. And nature’s allowed to take its course with physician’s and nurse’s role being to ease suffering.
Thanks, Jonathan. Julie.
Hi, Kathy. [inaudible]. I think one of the things that we have been pushed by COVID to do is to talk about advanced care planning. Certainly this group is probably familiar with that, but I don’t know that the general public it’s part of their every day, and to even consider what is that like? And COVID has given us all a refresher on mortality to say, “We need to think about what happens to us, given our relative health at the moment, whatever that may be and the threat that’s out there at the moment.” But the reality is threats exist all time. So we need to have open and honest conversations with our healthcare providers that do more than say, “What are my chances of recovery?” Because what we really want to know is what are my chances of a meaningful recovery at a particular time?
And I think sometimes we take the easy road out in answering patients about statistics. And what people want to know is about quality of life. What quality of life would be left if this were to occur? And we don’t have all the answers, but we certainly have some information that we can help provide to patients so that they can make the decisions that are right for them. And then the patients need to clearly articulate those wishes to their loved ones who might be making decisions for them. And in some ways I see that as such a gift to your loved ones, to be able to look back … And I’ve been the family member in those stressful situations where you’re going, “Well, what would this person really want? Did we ever really talk about this scenario?” And you’re trying to apply what you know about them at a time when you’re tired and stressed yourself.
And so the more we can talk about that in an open way, not just about COVID, but about all of our wishes, I think maybe that’s the gift that COVID has given us as well is to push us towards those conversations, both with our providers and our families.
Thanks, Julie. Lillian.
Yeah, it’s really interesting how we’re talking much more about end of life now than I recall we ever have and I’ve done this geriatric practices for a long time. It really might do some very much good for a lot of people who receive all sorts of interventions at the end of life with really no expectation of meaningful recovery or quality of life. One of my projects a number of years ago was looking at medication use at the end of last six months of life. And a lot of our patients were on 24 different medications, including medications to lower your cholesterol and type blood sugar control and somebody’s in the dying processes.
So we’ve all been working on that, but this has really given a push to that, that people are thinking more about what we should be thinking about because they’re now realizing it’s more a possibility, especially if you’re older, and if you do get exposed you might end up in really difficult situations. So yeah, absolutely. We need to all be doing advanced care directives and updating them.
I think that’s certainly true that COVID has produced an extra push, but actually I’ve found that medical assistance in dying, generally, certainly in BC and certainly on Vancouver Island, where it’s actually very well known, as you can imagine in a population with such a high rate of late, it’s very well known and people are now not surprised if I raise end of life issues.
I mean, I routinely ask all of my over 70s what their attitudes to medical assistance in dying is. I don’t ask them, “Do you want MAID?” Because how can they possibly know if they’re well whether they’re going to want MAID in future. But I say, “Oh, I just want to know if you were seriously and incurably ill, would you expect me to raise medical assistance in dying as an option?” I mean, [inaudible] 87% say, Yes,” they would, which is, obviously, a very high level. But they’re not surprised to hear that. Now that MAID is out there as an issue, they’re not surprised for me to be bringing out end of life issues in general. And in fact, they are pleased to do it.
Thank you. And-
One of our projects we did, we started two years ago, we’ve done two waves of it now, is looking at spinal cord injuries and when we raise our MAID, because one of the concerns was if you raise the MAID when somebody is in a recent crisis, so they just had their infraction, they just had their spinal cord injury there and suffering a lot of trauma and will this make it more likely for them to take that route rather than work on the rehabilitative things? Because we know that most people with spinal cord injuries actually adapt and they can often live a good life afterwards.
So that was a project we did. Wave one, was to ask care providers. Care providers we’re very interested. We really felt that we shouldn’t raise it too quickly so that people get a chance to adapt. They were worried about this.
Then wave two, we just did this Summer. We interviewed people who had spinal cord injuries at least five years or more so that the ethics committee would let us talk to them about it. And they actually were different. They felt that they had the right to know about this, and they felt that it was one of the choices, if it’s available, why should they not find out about it, but they should be given hope about the other interventions. They also said that the thing they felt is that they really need to be given the chance to talk to someone who’s gone through that. So peer support, which they felt was always the most useful thing for them. So we are allowed to raise it. Nurses in Saskatchewan are allowed to raise it, nurse practitioners, physicians, we can raise it, but we are supposed to raise it as part of the overall possibilities of end of life outcomes.
And so, yeah. Anyway, that’s all I have to say. We could all talk for hours, of course, because I’ve been involved with it. It’s getting closer to 500 than 400 cases of assessments, right? So it feels like it’s been my life for four years. Anyway, you may have to shut me up occasionally, Kelsey.
No, all good, Lillian. It’s all very interesting. And I’m sure our audience is happy to hear from all three of you about all the experience that you’ve had over the last few years with this and this year during COVID. One thing that many of you mentioned is advanced care planning and Dying with Dignity agrees. It’s incredibly important to do an advanced care plan and to have those discussions with your substitute decision maker.
We do have a new advanced care planning kit. So if you haven’t seen that yet, it is on our website. And we encourage everyone to take a look and download a copy if you haven’t already. But what might be helpful, just seeing some of the questions and comments coming through, what might be helpful for everyone is a bit of a reminder about MAID and an advanced care planning kit and what, under the current law, will and will not be honored.
So, Jonathan, I wonder if you wanted to speak to that a little bit and just let everyone know what the status is there?
Well, actually I think it’s certainly very clear on the C-14. Currently a person must have capacity, not just on the day of, but at the time of their medically assisted death. I have to be content that the person still understands why I’m there and what the intention is if I go through with giving them the drugs. And so COVID-19 won’t make a difference to that. It doesn’t make a difference to that. If you have COVID-19 mildly enough, I mean, not mildly, but in such a way that you still have capacity, you get to be assessed, you get to be found eligible or ineligible, and then to choose to have a medically assisted death as you still have capacity when all the other bits and pieces have been sorted out. If you lose capacity, you can’t have a medically assisted death.
I think C-7 does allow for capacity to be lost, but it requires you to have set a date. So you can’t say, “Well, I’m not really ready to set a date yet because of my ALS. But if I get COVID and lose capacity, I want to have MAID.” Not possible. You didn’t set a date. Now, it’s, of course, the case that you could set a date and then actually if you recover from your COVID, you could choose not to have. I think it will introduce some complexity, but the bottom line is you have to be assessed and found eligible on the basis of a serious incurable illness and under C-7 set a date. You can’t just leave it open.
There’s just one thing to add to that with lots of capacity. So what we do is we really want people to be able to live as long as they want to. And so we don’t want people to choose a death that’s too early because they’re afraid of losing capacity. So there was some well-publicized cases where people thought they had to choose the date too early. So I like the idea of people talking about the end of life to at least document that they actually [inaudible] talked to me in person. What we often do is encourage people.
So with our ALS program we encourage them to send those to me early because we have a discussion about that and people can discuss how you want to tell me when you can no longer speak and you can no longer write. “What would be the way you want to tell me? Is it two blinks, one blink? Is it two squeezes, one squeeze?” And if I’m not a hundred percent sure, who would interpret this for me, if I’m not sure? So which family member would you trust most to do that? So it’s a way of getting around the fact that at the end with ALS, it’s very hard to establish capacity yet their lives are awful.
And so we’ve had people who, basically, … I had one woman who we went ahead with and she wanted to live as long as possible, three young kids still. And all she could do is a little tiny grimace, but she made clear ahead of time what that would be and we knew what it would be. And when she had this … I know a lot of providers might not have agreed to this, but she was very clear in what she wanted. And she just wanted to be there as much as possible. She couldn’t even turn her head anymore. That’s how long she wanted to live. And then she finally got pneumonia. And when we approve people I give them my cell phone number.
And so she got pneumonia and we already explained that this would go very quickly once she has pneumonia. I got a text and we made it happen within … Well, it wasn’t that day. It often is that day when we can make it happen but it was the next day. And she really could just do a little twitch of her face, a consistent twitch interpreted in different ways.
So I like the idea that people at least document what they think even although we might not be able to legally follow it if they don’t set the date, but it helps in the whole process of establishing capacity, which is task and context specific. So if we have the context for people writing down and talking about what they always would have wanted, it’s easier at that end stage to take everything into account, to decide in that context, do we think this is a capable decision because we take into account what they wanted before? Is it consistent with what they would have wanted? And talk through it with their family members and so on. So-
Thanks, Lillian. Anything to add Julie?
No, I think that summarized that pretty good.
Well, I would just like to say that I think that Lillian is absolutely right. And not that Lillian, she’s so experienced, needs any reassurance. I would do exactly the same and I’m sure Julie would too. That it is patient and task specific or context specific and if one has already agreed what consent would look like in somebody who is greatly disabled then you can … It may sound slightly odd, but you can … As well as the issue of an actual physical thing in that situation, you can see it in their eyes. The person is still clearly there. And in the context of what’s already been agreed as to what the signal is, that’s consent.
And that’s much easier to do in person. And that’s why I so much agree. I think we really should, as much as possible, still see people. And it’s my ongoing rant with my students that so few of them are seeing direct patients. They’re doing so much virtual care. There’s so much you can see and feel in that interpersonal interaction with that person. You can also, when you’re in person, see how they interact with the family members. And I have had family members in the background giving sign for that person to answer. So people were clearly incapable … That person making signs what to say. And so a lot of that you can’t gauge as well in the virtual. So, yes, absolutely. How a person looks, their eye expression, how they interact with you in a non-verbal way, all of that is part of a good assessment, much easier to do in person.
But even if you go PPE, if those of us who have access to PPE, we can go fully dressed and still [inaudible] off them.
Okay. So the remaining questions. These are some that have been coming through throughout the session today. So we’ll try to get through some of those as well. One question is about the oral MAID option and if any of you have seen an increase in people requesting or following through with the oral MAID option because of COVID and restrictions?
So, Lillian, no increase?
Julie or Jonathan?
We’ve only had one case in Ontario in the last year under our newer drug protocol. We have people that ask, but I think when they find out exactly that we don’t mean a magic pill, and when they hear about what the details actually are, it’s not what they pictured. And so when they’re given all of the information they tend to choose a different choice, but it hasn’t stopped people from asking. But I don’t see any increase.
And same with you, Jonathan? No?
I have not had an oral case. I mean, I think there have been 14,000 medically assisted deaths now across Canada. I would be surprised if the total number of all cases is more than … We probably have the data, but more than a couple of dozen. I mean, it really is very rare.
It is very rare. And the concern is that … Well, there are a number of concerns with oral that you don’t know who takes it when you give a prescription, that’s my thing. And so it can go into a home, it sits somewhere. You don’t know who’s taken this thing. When a person takes it is often a lot of stuff to take in. It’s often very nauseating. A person vomits some of it up, aspirates it and ends up choking. And so the person might end up in a coma as well but not be dead. So the one case that is the most horrifying, which is why I would never do this, is a colleague that I know, but not in our area, that gave a prescription, an oral prescription, and quite some time later gets a call from a family member saying, “My husband finally took it. He’s not dead yet.” And I think it was a day later, “What do I do?” And this is now in a rural area, a long way away from any help, right? And so what we did in Saskatchewan, our College of Physicians and Surgeons actually wrote in that if we were to give ever oral, right? … Now, nobody’s doing it, that we actually have to be there the whole time. We have to watch it taken and be there and also get consent to rescue it with IV, because otherwise what do you do if somebody is in a coma and they don’t have permission to give you intravenous medication? They’re then in a coma. So there’s nothing.
So we have that written into our guidelines under the College of Physicians and Surgeons, which I think is very, very sensible because they [inaudible], right? So we actually … Once you explain this thing … I mean, as we were just talking, when people find out that it isn’t a sudden pill that’s going to work instantly, they, basically, none of them [inaudible] for it.
I think one of the reasons why some providers are still keen that the oral route should be available and wish that their college didn’t state that they should be present, is the problem with the ultra isolated patient who is hundreds of miles away. But I think that it’s difficult to make laws and regulations as far as the colleges are concerned that cover absolutely every eventuality. And the important thing is that this is safe.
If you look at the data from the dignity and dying laws from Oregon, for example, failures relate because they only have the oral preparation. I think the things to note that the failures are always about failure of communication and the person either … Well, the main thing is failure of communication. The person just takes it improperly. Or then like the case Lillian’s aware of, the patient just didn’t die.
I think it’s also instructive to note that in the US although there are now six or more jurisdictions where it’s legal, it’s still very unusual for people to choose to have what is essentially assisted suicide, because it’s the patient who takes the medication. And I think that one of the reasons that it hasn’t gained in popularity is the fact that there is a recognizable failure rate, which is essentially not the case with the IVs. We take very great care. We, most of us, not all, most providers will have two IVs inserted. I always say to patients, ” There’s one and a spare.” We have a plan for taking the patient to the hospital should this second IV fail in order that if we’ve been unable to put in a third IV, somebody can do it on the still unconscious patients so that we can complete the IV provision.
And patients knowing this, basically, their point is, “I want to be dead at the end of this. I don’t want things to drag out. I don’t want my relatives to suffer.” Because, of course, then it becomes not just the ordinary suffering that patients’ relatives have because it’s taking a long time for their loved one to die naturally. Now you’ve got all that horrible uncertainty of, “Is it going to work and is, in fact, the patient going to wake up?”
So there are lots of reasons why the oral preparation is not something that we as providers encourage and which patients choose not to have.
That’s the one. Just looking at one of the questions there from one of our … Ingrid Jacobsen about cognitive decline, “Is it going to be addressed?” So there actually is … Yes. So cognitive decline is an issue for people with MAID when a lot of people think if you have some degree of dementia you’re not eligible for MAID. And we have to remember that capacity to give informed consent is actually task and context specific. So we’ve had a number of people with dementia, with [inaudible] dementia. We’ve had a number of friends [inaudible].
PART 3 OF 4 ENDS [01:09:04]
… body dementia we’ve had a number of types of dementia Alzheimer’s type dementia. As long as that person has that understanding. Now, that person may take more visits to be able to really internalize all the information and to actually remember. So often that person will eventually remember but may need a few times that this is discussed. So just because they have cognitive impairment doesn’t automatically make them incapable. So the cognitive decline is important to talk about. So if a person is in a stage of cognitive decline, as soon as possible, going through all this information is important so that the person can still talk through it as long as possible.
It is, if a person waits long enough, conceivable of that, that person may no longer have capacity. So that in that situation, that might be an issue where it would lose, and unless that person has given a date with a new law, that person would also have the new law not be capable. But about my experience as people who really want maid and who even have lack of capacity, we do take longer.
So we had our first one with dementia had… I think we waited for about five months and we have quite a few visits with that person and the entire family to make sure that the person really internalize all the information. And then at the end, we felt quite comfortable that this person went through with it. In that particular case, it was the first time we did with dementia. There was a family member, a distant family member who was highly against it. So I got permission to videotape this person’s last discussion and I videotaped it. I still have it. If anyone takes us to court over it, with permission, of course, we have that whole videotape there.
And that person was able to really understand what it was and made it very clear they were asking for this. Some of our cases are very difficult. That way, if a family member is strongly antagonistic towards this, it makes life very scary, sometimes.
I think it’s actually Lillian, that’s very important point, dementia, and the concern is a lot of people talk about early dementia. I think it’s an unhelpful use of the word early.
People are surprised that people with dementia can have a medically assisted death. In Holland, and in fact, in the Canadian Association of MAID Assessors and Providers, which I’m a board member, is Julie. We call it the 10 minutes to midnight scenario, and we follow a person with dementia until shortly before we believe they’re going to lose capacity. The objection that some might raise is, well, what about that state of irreversible declining capability? Because that’s a requirement under the law. And the way that maid providers who do provide for patients with dementia see this, is, loss of capacity is in and of itself an advanced state of irreversible decline in capability because what could be more advanced than losing the right to make decisions for yourself? And the reasonably foreseeable natural death elements, which of course we’ll go. We’ve seen C 14, people with a diagnosis of dementia, usually have a life expectancy of perhaps five to six years.
And thanks to the a case could be a case theriot, we have come to the conclusion that reasonably foreseeable can mean death as far away as five to six years or potentially longer. There is no actual requirements to what’s called prognosticate to actually state how long a person has left to live. But this is why we can provide maid to patients with dementia who still have capacity, but are about, we believe to lose it.
Julie, anything to add?
Yeah, I think, Jonathan makes some great points for about accessing maid with dementia, but what’s also important to remember is there is a very limited number of providers nationally who have the experience to understand how the law can be applied that way. So there absolutely are inequities across the country, depending on where you live and which providers you have access to in the interpretation of the law. And so I find patients run up against that in many ways where pockets of particular geography make the same interpretation and where the patients were somewhere else, they may get a different result. And I think that’s very challenging for patients.
Some point. So we have about 13 minutes left. We’ll try to get to a final question or two before we wrap up. So Lillian, you spoke earlier on about some of the research you did about PTSD that family members and loved ones might experience after a maid death.
This question is more so about grief after a maid death during COVID-19. So in those situations where perhaps a family member can’t travel from outside of the province or outside of the country to physically be there, and maybe they are doing their goodbyes with their loved ones through Skype or Zoom, or a similar video technology, or just a phone call, is there any… And I don’t know if there’s been any research on this yet, or if there will be, but is there any indication of how the grief experience might be different for that individual? Maybe Lillian can get us started with that.
Yeah. So, I’m not sure that it is any different because I think any death, any grieving is very difficult if you don’t really get a chance to say goodbyes. And often your goodbyes in person, sometimes the maid, we talk more about it and we are more alert to all the issues that happen afterwards because it’s so planned. But I think it’s probably very similar to the rest of deaths that are happening. It is so hard for people to see a family member die when you really have no chance to be there one way or the other. At least with maid, we know when that’s happening and that person at least has a lot of facilitated virtual conversations with that person. It’s when that natural death happens quickly with no preparation, nobody’s being there for the last few weeks or months, that’s much worse. So I think COVID maid death might actually have an advantage because of the preparation involved.
Thank you. Julie.
I tell this story sometimes about what’s the difference between maid death and another death? Families, I tell them you’re still going to be grieving. You’re going to be grieving the loss of somebody you deeply cared about and loved. But the difference is that there’s no death vigil. So that time period where you don’t want to leave the room for fear of missing mom’s last breath, you’re afraid to go to Tim Horton’s, you’re afraid to go home and have a shower. And so, what we have is very tired people who haven’t slept or eaten or changed, or had those mechanisms that allow us to be at our best to cope with stressors.
And I tell the story of bringing my firstborn home and I was anemic and sick and struggling and saying: “Mom, this should be so much more fun than this, but I’m exhausted, and I’m struggling to enjoy this moment because I just feel so awful.” And so I compare that a little bit to those scenarios where we are physically not at our best to be able to manage the intense emotions that we are about to feel and maid allows for that a little bit. It allows us to come while we’ve eaten and showered, and rested at least a little bit.
So I see that as an advantage. I think people are still going to struggle with being a part and right now our cups are empty. I talk to random strangers when I’m walking the dog, mostly because I hadn’t seen people otherwise. And we’re chatting the other night, walking down the street on opposite side saying: “This is really tough. Our kids are struggling. Our parents are struggling. We’re about to come up to Christmas and nobody knows whether we should see that one relative or not.” The advice is not, but then you think about they live alone, what would you do? And everybody’s situation is different. So how we apply that create stressors in our lives, and we’ve all lived under that intense stress for a year now. So are [inaudible] and I think that really puts people in a rough spot when it comes to adding grief on top of it.
Well said Julie. Jonathan.
Well, just say it’s more about pre-COVID maid because we’ve talked about the difficulties of getting people together and so on. But just to speak to what Julie says, my colleague and friend Tanya Doris who is the other main provider, who we came together pre C 14 when we knew it was coming so that we were ready to go when the law allowed us to, and we gave a talk in a church actually, I was one of the rest of the few churches that was supportive then, or now of all medical assistants in line. And the congregation of about a hundred, you heard Tanya say that the wonderful thing about maid and it is a wonderful thing. The wonderful thing about maid is that the last thing the person sees the faces of all the people who love the most. And it really is a fantastic thing about maid.
Maid isn’t right for everybody. And we as maid providers don’t believe that it’s right for everybody. It’s absolutely right for some people and for them to be able to choose to have that and to give their family that because that’s often what it’s about. We hear, I don’t want to be a burden on my family, and we see patients bring this to their family, this ability to come together so that they can together, and we heard about anyways celebrate the life of the person with the person. They get to hear all those lovely things that people want them to know, but don’t know if it’s time yet to say it because of course the maid it is. That’s the time. And it’s just, yeah. For some people, it is so right.
Thank you. For one final question before we wrap up, and this can be connected to just anything related to end of life discussions or planning or considerations, but as we go into the holiday season, as well as the end of the year, like time of reflection for a lot of people, do you have any advice for Canadians who are watching this afternoon? Anything they should be keeping in mind or thinking of? Just chime in whoever has something off the back.
I would say, just make sure that your… Whatever it’s called in your province or health representative, your power of attorney, substitute decision maker, make sure they know what your wishes are. If you are in an end of life situation, make sure they know what your wishes are because there’s no doubt that it is more difficult for healthcare professionals to gather the necessary information over the holiday period. And if you’re somebody who’s been found eligible for a medically assisted death, but you haven’t yet set a date, if you have it… The likelihood is you have already discussed with your provider, how to access them during this period. But if you haven’t give them a call, contact their office and find out what the system is for getting for you or your supporters to contact them, if things seem to be changing and you need to set a date.
I think one of the other things is that we talked earlier, I think it was Lillian talking about enduring requests and how though seeing those patients over time really provide us with more information. And so I want to share with people to say, let your family know about enduring request. Don’t have this conversation one time and put it in a drawer because when they are under pressure to make those decisions on your behalf, they’re going to remember: “I talked to mom about this many times. I talked to dad about this many times.” And if they had one conversation with you, and then you said: “Oh, well this was my covid year, we’re going to talk about advanced care planning, and then we’re going to never talk about it again.” Situations change, people change, health changes over time. And so this brings it forward this year, make sure that you’ve talked about it, not just this year.
There’s a question here I was just thinking I would like to raise. So Ingrid asked, has it ever happened you had to cancel a maid when people lose capacity between assessment and date. So it is not very common for us. Part of the reason is that we think we’ve discussed that right away at the first assessment. And we talk to people about the family about how you tell if somebody’s starting to lose capacity. So we have a fellow with really bad liver cancer, and obviously did the first assessment and the person. So we talked through, what are you going to see? So we actually give some of the neurological symptoms. So what are you going to see? So there’s kind of the twitching you might see, the eyes become a yellow, the itching becoming. And so then once they’re eligible, they find that paperwork, I give them my cell phone. And so that particular case, I again then get a text saying: “My dad is not really itchy, he’s starting to turn yellow. Can we talk?” And so, once you give that information, that person actually went super quickly and they don’t always know they’re going quickly because they don’t know what should they look for. So it’s important to explain that what some of the symptoms are that they’re likely to see. So if somebody becomes more model for gradually, please contact us…
Some people don’t have to wait 10 days. They can be expedited if they’re starting to his capacity. But they need the information very similar to what I’ve said, this woman who didn’t pick up the course firmer, this thing in her hands with renal failure, you can eventually go into a coma and then you can’t consent. So if you get that information at that assessment for family members and ideally there’s family there as well, most people will allow her family there that you can get around that most of the time, as long as you have it all prepared. So when I think it might happen quickly, I got all the paperwork organized. I get everything ready to go. And so we’re very prepared, just a matter of putting a date on, I even do the death certificate. In Saskatchewan, we do our own death certificate. I know Ontario, I think it’s coroner still, but you can get everything ready except for the date at the end.
No, Ontario is doing the death certificate as well, and often prepare all of that information in advance, just like you’re talking about. I find… you think about the last time you were on vacation and somebody says, well, what day is it today? And you have no idea if it’s Tuesday or Wednesday. I mean, that’s a sign of a good vacation, right? But if our patients don’t get out, they have no idea if it’s Tuesday or Wednesday, they often their sleep patterns are off. And so we’re orienting them with calendars and dates on the wall in the hospital. So it’s important to remember they may not know, am I declining or did I just have a bad day? And so to give them those tools, I often will give them like a palliative performance scale as you can Google it and have them learn how to rank themselves. And when they start to see those numbers consistently going down, they’re going down. And it’s just one tool that people can use, that’s pretty easy to know whether a change is happening or whether you’ve just had a bad day.
Losing capacity, and therefore the right to maid is a tragedy. And so I think like Lillian, as [inaudible] Julie and I strongly suspect majority of maid providers, we give them direct access. I say: “text me, call me if you or your family are unsure, if you’re worried that this is a lost capacity, give me a call.” Because I can either reassure and say: “No, things looking right, I think we can wait until the day… No, I think you haven’t set a date yet, I don’t think quite yet to.” But on the other hand we messaged them and I say: “Actually, I need to get in contact with the pharmacy.” And I actually very recently within the last week, I’d set the date, it was the patient set the date. I got a recall in the morning, and I was standing in the afternoon providing medical assistance in dying because we waited any longer capacity would have been mastered. It is a tragedy when that happens.
And so there’s a question here about calling it assisted suicide. So we should… When are we going to stop calling the assisted suicide? It should stop because all our official documentation is really medical assistance than dying at this point. But if you were… But people who are opposed who maid still do call it assisted suicide, which is very judgmental because most of our patients are in the trajectory for death and they are really not choosing to die, they’re choosing how they die and when they die. And so I agree, absolutely we should not be calling it assisted suicide. Now, the question about that was about paramedic. So, paramedic in many of the provinces and Saskatchewan have assisted with IDE if need be. And in the Southern part of our province, that was actually done very regularly, where we haven’t needed as much in the North where we have a lot of any system all, they can always get it going.
But they can actually support this. So this depends on each province and sometimes even areas within the province whether there’s been some discussion with a paramedic. So it is nice to have some advanced discussion with the paramedics. If you’re involved in maid just to say how do you feel about this? These things happen sometimes. So that was one of the questions. And then we’re asked when the [inaudible] asked, is there a better method than the one Canada uses this with oral? This Holland provide one who was oral option. So, there are different kinds of protocols that are oral protocols. There is a factor a barbiturate that is being talked about is not always as easily available. That might make it a little bit faster, but I don’t know if that reachable. Jonathan might comment on that.
I’m sorry, comment on the…?
That there is a barbiturate, so we’re talking are they better or…?
Yeah, there is no single oral medication that can be used. It still requires a package. I do just want to actually comment on the use of the word assistance. So when I used it, I was talking about Oregon, which is, they only allow the old route and there it is called physician assisted suicide. I actually totally agree with Lillian, that it’s not an appropriate use. It’s not appropriate to refer to what we have as assisted suicide because it is medical assistance in dying. We don’t distinguish between the intravenous route and the oral route. A professor of linguistics might say, well, the person is lifting it up themselves, and thus administering themselves. That’s unhelpful, not necessary, not useful. It’s medical assistance in dying in Canada. And that’s how we should approach it. And so in part quite rightly again, back to Lillian because otherwise is to stigmatize it and we shouldn’t.
That’s helpful. I think clarifying the terminology and making it clear that why we use maid and what the differences look like in other jurisdictions. I think that’s a good reminder for everyone. And with that said, I think we will call it a day. I’d like to once again thank you all Julie, Lillian and Jonathan for joining us this afternoon and for sharing so openly about your experiences as a maid assessors and providers and researchers, and just reflecting on the year that we’ve had.